Hair woes? Hacks for when you're feeling hopeless...

How to keep moving when the world feels like it's falling apart.

“I’m just, like, blah.”

A poignant statement from me. This morning. To my husband. Sometimes it’s hard to find the words to express how you feel. Even when you are a writer.

But one thing I try to remind myself:

When you’re feeling hopeless…. keep moving.

It’s in the stillness that the hopelessness hits. Which is why I’ve been known to cry. In public. While getting my hair done. At Dry Bar. Unfortunately, this wasn’t an isolated incident. It’s was simply the most recent version…

I had a big work event on the horizon. I was feeling overwhelmed. Somehow the wires had gotten crossed, and it looked like my Dry Bar appointment might not happen.

My hair looked like a knotted bird’s nest. My exterior matched the chaos of my interior.

Standing at the reception desk, as club music from the early aughts played, I began sobbing. And even once they squeezed me in for an appointment, I couldn’t stop.

I cried for 45 minutes straight. Drowning out the sound of Usher & Pitbull’s “DJ Got Us Fallin’ In Love.”

It wasn’t about the hair. Obviously.

The stillness of sitting in that chair gave rise to emotions that had been bubbling to the surface for weeks. Maybe even months. Certainly, years.

“At least I embarrassed myself in front of a small group of strangers as opposed to a room full of colleagues,” I quipped between tears.

“I guess so,” the hair stylist said, then turned the — very loud — blow dryer on. It might drowned out my words. But certainly not my thoughts, which were on overdrive. Which is saying something. Considering my mind moves more quickly than my hyper-active and very agile three-year-old son.

From that point on, the hairstylist and I mostly sat in silence as she curled my hair. I attempted to make small talk between tears, but no one was in the mood for niceties.

I’m pretty sure she squeezed me in just to rush me out the door. Crying isn’t good for business. (Unless you’re selling Zoloft or therapy.) I get it. And I don’t blame her.

No one knows the other person’s quiet battle. She’s just trying to get through her day, too. And there’s certainly a lot to cry about lately.

If you’ve been feeling hopeless, you’re not alone. It’s hard to see the news and know what to do. (I’m in Los Angeles where the National Guard was called to manufacture very real — and terrifying — circumstances for a large portion of our community. A certain orange politician is doing it to create fear and dominate the news cycle to distract from other stories. He’s a lousy — and dangerous — human being, but he’s always understood how to play the game of media. Which is how our country landed here. But I digress.)

Feeling hopeless and helpless became familiar friends during our journey with Evan. There weren’t treatments available for her rare disease. Our family had no choice but to become comfortable with the unknown. Or at least as comfortable as anyone can. But it’s an approach I’ve tried to carry with me as I navigate life after Evan.

I’ve learned to shift focus to small things that are within my power. Which, often, doesn’t feel like much. But it’s easier to tackle a small goal versus being enveloped and overwhelmed by the big picture. The most recent example of this…

Last week, I became aware that there might — FINALLY — be at least ONE treatment available for mito kids like my daughter Evan, who passed away in 2022.

But the FDA pulled the plug. (Thanks RFK, Jr.) They left the door open for reapplication, but they're bankrupting the company in the process. (The organization had to lay off 30% of their staff in order to prepare for reapplication.) Not to mention the FDA's denial is riddled with problematic requests.

In the meantime, desperate families (who are adamant they've seen very necessary progress!) aren't likely to have access via compassionate care because the drug's future is so up in the air. The mito community experienced a similar predicament back in 2012 with EPI-743, which was the last time this community had any hope for treatment. Let alone a cure.

At the time of Miss Evan's passing, there were NO treatments available.

Now there is a path forward for other families struggling to save their children's lives... But the FDA is denying families the opportunity to see their children walk, talk, thrive, and LIVE. Miss Evan ultimately passed away from heart failure. Had this drug — elamipretide — been available at the time, Evan would have benefited.

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It’s too late for my daughter. But I yearn to help.

I understand the world of media. I am the media! (Albeit, largely lifestyle, fashion, and entertainment — which is far from the same thing.)

But I know the business firsthand and as a mito parent recognize: We need media stories to apply pressure to politicians — and for other major outlets to pick it up.

We need to make people care.

I immediately started contacting colleagues at the New York Times, NBC News, People Magazine, the Associated Press, The Atlantic, etc, etc, etc. Anyone who might listen. Anyone who might help.

The problem is — it’s a nuanced story. It’s not as simple as a headline that screams, “National guard called in against its own citizens.”

There’s been some polite interest, but so far, no needle has been moved. Again, I get it. There are a lot of voices — rightfully — screaming right now. It’s hard to be heard. But it’s all any of us can do. Keep speaking. Keep trying. Keep moving. Toward whatever direction is causing you to feel hopeless.

My therapist asked how I felt having reached out to colleagues. I think she thought I’d say, “Empowered.” But that’s not the case. I told her it reminded me of when Evan and I were trapped in the hospital during our first (of many) month-long stays.

In those literal life and death settings, you learn quickly to become your child’s advocate. Nobody knows your kid’s continuity of care better than you. But that doesn’t mean you’re always heard. Every day I spoke up (and STOOD UP) to nurses, doctors, and administrators to fight for my daughter’s needs.

On just one occasion, this led to me shouting at 3 am in the hallway of a children’s hospital. I was begging for a supervisor because my daughter — who couldn’t be without food or fluids for more than minutes at a time without it impacting her brain — was still fasting due to reasons unknown. Other than a lack of communication between the day and night shift.

“I WANT TO SEE YOUR SUPERVISOR!” I screamed at a doctor in training.

To no avail. I was powerless. I used my voice. LOUDLY. But it fell on deaf ears. An irony not lost on me considering my daughter was born without the ability to hear.

The following morning, the attending doctor came to our hospital room to apologize. Profusely. He, too, didn’t understand why she wasn’t fed that night. He promised there would be an internal review as to what went wrong. He said that when I’d asked for a supervisor, someone should have been sent.

“We are a teaching hospital,” he shrugged.

THAT is how I currently feel. I’m using my voice. It hasn’t yet been heard. But that won’t stop me from whispering, speaking, and — if needed — SHOUTING. For my daughter. For mito families. And for my own personal healing. Which is why I’m here writing right now.

The only thing that counters feeling hopeless is HOPE. And forward movement.

So even with messy hair and a few tears…. I. Keep. Moving. It’s all any of us can do.